Hospitals are under increasing pressure to improve quality, safety, patient experience, and patient engagement while doing more with fewer resources. Yet one of the most valuable and underutilized assets already exists: patients, families, and caregivers.

Since 2014, I have been researching Patient and Family Advisory Councils (PFACs), work that began with a deeply personal experience. My sister, Joan, spent two weeks in the intensive care unit after being admitted with an unknown infection. As a former journalist, I spent each day at her bedside talking with experts around the country and researching her condition. Each morning, I brought what I had learned to our family meeting and offered recommendations for her care. My suggestions were dismissed, yet days later, nurses would tell me that many of those same recommendations had been implemented. By then, it was too late. My sister died tragically.

I came away from that experience asking a question that has guided my work ever since: Where was the patient and family voice in the hospital? That question led me to Patient and Family Advisory Councils. I conducted my first national survey of hospitals about their PFACs in 2014. Wanting to understand more about what makes these councils effective, I returned to school to pursue a PhD and made PFACs the focus of my dissertation. The result was one of the most comprehensive studies of hospital PFACs, including:

• A scoping review of 143 published international studies
• Qualitative interviews with hospital leaders across the United States
• A national survey of more than 220 hospitals

Together, this research identified the characteristics of high-performing PFACs and the organizational practices that distinguish effective councils from those that struggle to achieve meaningful impact. My research also demonstrated that effective patient and family partnerships can improve patient safety and experience, strengthen care processes, and generate financial value for healthcare organizations.

One lesson emerged repeatedly: Inviting patients and families to the table is only the beginning. The real value comes from acting on their insights and measuring what changes as a result. That lesson is the foundation of this playbook. 

My hope is that the playbook provides PFAC leaders with a practical framework for standing up a PFAC and demonstrating the measurable impact of patient partnership.

Barbara Lewis, PhD, MBA
Founder and President, Healthcare PX - a nonprofit dedicated to improving the patient experience
Co-chair Emerita, Beryl Institute Global Patient and Family Advisory Board
Co-chair Emerita, Kaiser Permanente Southern California Regional Patient Advisory Council

Since the first Patient and Family Advisory Council (PFAC) was established in the early 1980s, thousands of hospitals across the United States and around the world have recognized the value of partnering with patients and families and have established PFACs. According to the American Hospital Association’s annual survey, more than half of U.S. hospitals have reported having a PFAC, and many hospitals and health systems operate multiple councils. In 2010, Massachusetts became the first and only state requiring that all hospitals have a PFAC.

PFACs are also championed by many of the nation’s leading healthcare organizations and government agencies as an important strategy for advancing patient and family engagement and improving healthcare quality, safety, and experience. These include federal agencies such as the Agency for Healthcare Research and Quality (AHRQ) and the Centers for Medicare & Medicaid Services (CMS); national organizations such as the American Hospital Association and The Joint Commission; and patient experience and advocacy organizations such as The Beryl Institute and the Institute for Patient- and Family-Centered Care. Many of these organizations have also created their own patient and family advisory councils or similar structures to incorporate the patient voice into their work.

Yet establishing a PFAC is only the first step. The greater challenge is ensuring that the council has meaningful influence and demonstrating what improvements were made because patients and families were involved. 

A high-impact PFAC begins well before the first meeting. Taking time to assess organizational readiness, secure leadership support, establish clear expectations, and build the right infrastructure creates a stronger foundation for long-term success.

According to my research, leadership support is one of the most important foundations of a successful PFAC. Without visible and sustained leadership backing, even a well-designed council may struggle to gain credibility, engage departments, obtain resources, or translate recommendations into organizational change.

A PFAC may begin as a grassroots effort led by staff who recognize the value of patient and family partnership. However, long-term success requires leadership to understand that a PFAC is more than another committee. It is an organizational resource that can help improve quality, patient safety, care experience, and operational performance. Effective PFACs may also help hospitals avoid unnecessary costs and identify opportunities for financial savings.

Before launching a PFAC, assess whether the organization and its leaders are ready to meaningfully partner with patients and families. The following Leadership Readiness Assessmentcan be used as part of a PFAC feasibility study.

Rate each statement from 1 to 5, with 1 = Lowand 5 = High.

1. How supportive is leadership in responding to patient  complaints?
2. Has leadership created a robust process for handling  patient complaints?
3. Does leadership create an environment in which patients and families feel supported enough to speak freely?
4. Is this an environment where patients and families participate in their care?
5. Is this an environment where patients’ and families’ opinions are respected?
6. Does leadership believe that patients and families bring a perspective that no one else can provide?
7. Does leadership believe that patients and family members can look beyond their own experience and issues?
8. Does leadership believe that patients and family members can have a positive impact on the hospital?
9. Does leadership value the opinion of the patient and family member?
10. How supportive is leadership in starting a PFAC?

Interpreting the Score

Maximum score: 50

Total Score Leadership Readiness

 25 or below - Build the Foundation: Additional leadership   education and organizational preparation are recommended before launching a  PFAC. 

26–40 - Nearly Ready: Leadership appears receptive but may   need additional information about PFAC benefits, expectations, resources, and   potential impact. 

41–50 - Ready to Launch: Leadership demonstrates strong   readiness to support PFAC implementation and meaningful patient and family   partnership.

Do not use the assessment simply to determine whether to start a PFAC. Use the results to identify where additional leadership education or organizational preparation is needed.

For example, a low score on whether leadership believes patient partners can contribute beyond their personal experiences may indicate a need to share examples (see below) of successful patient partnerships. A low score on whether leadership will act on PFAC recommendations may signal a larger organizational culture issue that should be addressed before recruitment begins.

The goal is not merely to obtain leadership approval to establish a PFAC. The goal is to secure leadership commitment to listen, respond, provide appropriate resources, involve the PFAC in meaningful work, and act on its recommendations when appropriate.

If you would like to use this computer model for this task, please email me and I’ll send the Excel document, which is easy to use. (BLewis@HealthcarePX.org)

Research highlights many examples of where PFACs have had a financial, safety, and operations impact on hospitals. Here are some examples.

Impact Category | Organization | PFAC Activity | Metric/Outcome | Financial Implication

Financial / Safety  Tampa General Hospital  PFAC redesigned colonoscopy discharge instructions and recovery education | Revisits decreased from 1.42% to 0.6% | Estimated   savings of $5,000-$18,000 per avoided revisit; reduced unnecessary utilization

Financial / Operations | Johns Hopkins  Hospital | PFAC helped design a hospitality discharge lounge | Average   discharge time reduced by 40 minutes per patient | Increased bed capacity, throughput, and operational efficiency 

Financial / Access | Cincinnati Children's Hospital | Spanish Family Forum improved communication and outreach for newborn screening   appointments | No-show rate reduced from 17% to 12% | Better clinic   utilization, improved scheduling efficiency, increased revenue capture

Patient Experience | William Osler   Health System | PFAC partnered on improving involvement in care | "Always   involved in care" increased from 77.5% to >82% | Improved patient experience performance and loyalty

Safety / Quality | Stanford Children's Health (Cystic Fibrosis Program) | PFAC promoted advance care planning discussions | Advance care plans increased from 10% to 38% | Better care   alignment and reduced unwanted interventions

An engaged executive sponsor is critical to the success and sustainability of a high-impact PFAC. Ideally, the sponsor should be a member of the C-suite, such as the CEO, COO, CNO, or another senior executive who has the authority and influence to elevate the patient and family voice throughout the organization.

Look for an executive who has demonstrated:

• Commitment to patients and families: Consistently supports patient-centered initiatives and values the perspectives of patients, families, employees, and colleagues.
• Strong listening skills: Listens to understand, welcomes different      perspectives, and creates space for others to contribute.
• High emotional intelligence: Demonstrates empathy, self-awareness, respect, and sensitivity through both words and actions.
• Openness to feedback: Is willing to hear perspectives that may challenge      existing practices or assumptions.
• Organizational influence: Has the credibility and authority to champion PFAC recommendations and encourage departments to engage patient partners in their work.

The executive sponsor should do more than lend their name to the PFAC. An effective sponsor visibly demonstrates support, reinforces the importance of patient and family partnership with other leaders, helps remove organizational barriers, and advocates for involving the PFAC in all patient-facing initiatives.

Avoid selecting an executive simply because of their title. A sponsor who dominates conversations, is dismissive of differing perspectives, or is uncomfortable receiving candid feedback may undermine the open dialogue that a successful PFAC requires.

If a C-suite sponsor is not available, identify the most senior leader who genuinely supports patient and family partnership and has sufficient organizational influence to back the PFAC. At the same time, continue working toward C-suite engagement. A high-impact PFAC needs both a strong internal champion and visible senior leadership support.

Once the executive sponsor is identified, the next step is to select a PFAC champion who will take responsibility for launching, leading, and sustaining the council. The champion plays a critical role in determining whether the PFAC becomes an influential organizational partner or simply another committee.

My research found an important distinction in how PFAC champions are selected: PFACs tend to be more effective when champions voluntarily apply and compete for the position rather than being appointed to the role. This suggests that motivation and genuine commitment to patient and family partnership matter. Someone who actively seeks the position is more likely to bring the enthusiasm, persistence, and sense of ownership necessary to build a high-performing council.

Whenever possible, treat the PFAC champion role as an important leadership opportunity. Develop a clear role description, communicate the opportunity internally, invite interested individuals to apply, and interview candidates. Avoid simply assigning responsibility to someone because PFAC oversight appears to fit within that person's existing job description.

Look for a champion who demonstrates:

• Passion for patient and family partnership: Genuinely believes patients and families should have a meaningful voice in improving healthcare.
• Strong listening skills: Creates space for patient partners to speak openly and listens to understand their perspectives.
• Organizational credibility: Is respected by colleagues and can work effectively with employees and leaders at all levels of the organization.
• High emotional intelligence: Demonstrates empathy, self-awareness, diplomacy, and respect, particularly when navigating difficult      conversations or conflicting perspectives.
• Strong organizational skills: Pays attention to detail and can successfully manage meetings, follow-up activities, multiple projects, and competing priorities.
• Ability to build relationships: Develops trust with patient partners,      clinicians, staff, and leadership and can connect the PFAC with      departments throughout the organization.
• Persistence: Follows recommendations through the organization and helps ensure that patient partner feedback does not end when the meeting ends.

The champion's role is to create the conditions for meaningful partnership, bring projects to the PFAC, and ensure that patient and family insights move from discussion to action.

Best Practice: When possible, recruit and competitively select the PFAC champion rather than appointing someone to the role. Your selection process should identify the person who genuinely wants to lead the work, not simply the person whose position makes them the most convenient choice.

Since the pandemic when hospitals migrated to virtual PFACs, budgets plummeted. In my research, I found that 46% of responding hospitals have a PFAC budget, and 39% of those have a budget less than $2,000 a year. 

Opinions are split on whether PFAC members should be paid. Some people believe that paying PFAC members changes the dynamic and they should not be paid. On the other hand, others advocate covering members’ travel costs, paying for babysitters, and even paying an honorarium. In Canada, if you involve a patient, family member, or caregiver in an activity such as a PFAC, they must be paid. 

Creating a PFAC can take anywhere from three months to one year. One of the first tasks is to create the action items required and the timeline. I have developed over 30 tasks for standing up a PFAC. Please contact me if you’d like the list. (Blewis@HealthcarePX.org) 

Once the support of leadership is attained, the next step in the process is to find the council members.

In the original research that I conducted in 2014, the size of PFACs were as follows:

• 5 to      10 members – 23%
• 11 to      15 members – 30%
• 15 to      20 members – 22%

In the 2025 research, the average number of PFAC members was 13. 

A high-impact PFAC should reflect the diversity of the patient population the hospital serves. Too often, councils are composed primarily of retired, White women. While these advisors can make valuable contributions, a council made up largely of one demographic group may not capture the range of experiences, perspectives, and needs of the broader patient population.

Before recruiting advisors, review the hospital’s patient demographic data. Most hospitals already collect information that can help guide recruitment, including age, race and ethnicity, gender, language, geographic location, and other characteristics relevant to the populations served.

Use these data to identify populations that should be represented on the PFAC and establish recruitment goals accordingly. Consider not only demographic characteristics, but also different types of healthcare experiences, such as inpatient and outpatient care, emergency services, chronic disease management, maternity care, behavioral health, and caregiving.

Whenever possible, recruit at least two patient partners from an important demographic or patient population rather than relying on one individual to represent an entire group.Research suggests that people may be more comfortable speaking up when they are not the only person in the room who shares an aspect of their background or experience.

The goal is not to create a council in which every demographic category is represented mathematically. Rather, the goal is to build a PFAC with a breadth of perspectives that reasonably reflects the community the hospital serves and ensures that traditionally underrepresented voices are included.

Best Practice:Review the PFAC’s composition at least annually and compare it with current patient demographic data. When gaps are identified, make those populations a priority in the next recruitment cycle.

One of the goals of identifying council candidates is to reflect the demographics of the community, which the hospital serves. Qualities and skills of patient and family advisors, as identified by the Institute for Patient- and Family-Centered Care, include individuals and families who are able to:

• Share insights and information about their      experiences in ways that others can learn from them.
• See beyond their own personal experiences.
• Show concern for more than one issue or agenda.
• Listen well.
• Respect the perspectives of others.
• Speak comfortably in a group with candor.
• Interact well with many different kinds of people.
• Work in partnership with others.
• Have a teachable spirit.

Term Limits

According to my 2025 survey, 63% of responding hospitals indicated that they had a term limit. Although 60% said they had a two year term limit, having a one year limit with members able to re-apply after one year, ensures that members who are not a good fit can be rotated off the council. 

Time Commitment

Most PFACs meet once a month with the average length of meeting at 90 minutes.

Time of Day 

Nearly 50% of PFACs meet in the afternoon with 40% meeting after 6 p.m. Evening meetings allows more people who work to attend. 

Council members should mirror the hospital demographics. One of the best ways to accomplish this is to use the electronic health record (EHR) to identify potential members. Other ways include:

• Church groups 
• Community groups
• Grievances
• Local TV Public Service Announcement (PSA) – PSAs      have worked well with several hospitals
• Messages in pharmacy bags
• Newsletter articles requesting volunteers
• Pamphlets in waiting area
• Patients and family members who have complimented or      complained to the hospital and staff
• Posters in the cafeteria
• Recommendations from staff, ombudsmen, etc.
• Social media
• Survey comments
• Tables at hospital entrances 
• Visits to the wards
• Website page that invites visitors to apply

PFAC applicants should fill out a comprehensive application to ensure that candidates are well-suited for the role. In addition to name, address and contact information, applications should contain work and volunteer history. Questions could include:

• Why do you want to serve on the PFAC?
• In what areas can you potentially contribute to a      PFAC?
• What are your areas of interest?
• What are your expectations of the PFAC? 
• What skills do you have that the PFAC might utilize?

In an effort to reflect the demographics of the hospital, questions could also include the following: age, gender, ethnicity, languages spoken, sexual orientation, etc. (Check with your legal department to make sure these questions are appropriate.) Another question should ask about the candidate’s experience in the hospital such as hospitalization, emergency room, intensive care unit, etc. 

Track the source of applicants to determine which are successful by asking, how did you hear about us? The Agency for Healthcare Research and Quality (AHRQ) has an example of an application on their website as Word and PDF documents:

http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html

Every prospective advisor should be interviewed individually before being invited to join the PFAC. The interview provides an opportunity to learn more about the candidate, clarify expectations, and determine whether the individual is a good fit for the council. Just as importantly, it gives the candidate an opportunity to decide whether PFAC service is right for them.

The goal is not to select people who will agree with the hospital. Some of the most valuable patient partners are those who have experienced problems with their care and want to help improve the experience for others. The goal is to identify individuals who can move beyond their personal experiences, listen to different perspectives, collaborate constructively, and contribute to solutions.

Questions may include those from the PFAC application or questionnaire, along with questions such as:

• During a recent experience with the hospital, what impressed you?
• What disappointed or frustrated you?
• How would you turn those disappointments into opportunities for improvement?
• Why are you interested in becoming a patient partner?
• What do you hope to contribute to the PFAC?
• Can you describe a time when you disagreed with someone but were still able to work together productively?
• How comfortable are you sharing your perspective in a group?
• How comfortable are you listening to perspectives that differ from your own?
• If the hospital decided not to implement a recommendation you strongly supported, how would you respond?
• Are you comfortable discussing issues from the perspective of patients and families broadly, rather than focusing only on your own healthcare experience?
• Is there anything that would make it difficult for you to participate consistently in meetings or PFAC activities?

What to Look For

Strong candidates do not need prior committee experience or healthcare expertise. In fact, their value comes from bringing the patient and family perspective, not from becoming healthcare professionals.

Look for candidates who demonstrate:

• A genuine interest in improving care for others
• An ability to look beyond their individual experience
• Willingness to listen as well as speak
• Respect for different opinions and experiences
• Curiosity and openness to learning
• Ability to provide constructive feedback
• Reliability and willingness to participate
• Comfort asking questions when something is unclear

Be cautious about excluding candidates simply because they have had a negative hospital experience or express strong opinions. A dissatisfied patient who can channel that experience into constructive recommendations may become an exceptionally valuable member of the council.

Use More Than One Interviewer

Whenever possible, include two interviewers, ideally the PFAC champion and an experienced patient partner. Having a patient partner participate reinforces the principle of partnership from the beginning and provides an important perspective when evaluating candidates.

Use the same core questions and evaluation criteria for every candidate. A simple interview rating form can help make the selection process more consistent and reduce the influence of individual interviewer preferences.

Best Practice: Recruit patient partners for their ability to contribute, collaborate, and represent broader patient and family perspectives, not because they are likely to agree with the organization. A high-impact PFAC needs constructive voices, not simply agreeable ones.

When patient partners leave the PFAC before completing their term, take the opportunity to learn from their experience. Conducting a brief exit interview can help identify barriers to participation, uncover concerns that may not have been raised during meetings, and reveal opportunities to strengthen the council.

Whenever possible, the conversation should be conducted by someone with whom the departing member feels comfortable speaking candidly. Emphasize that the purpose is to learn from their experience and improve the PFAC for current and future members.

Consider asking:

• What influenced your decision to leave the PFAC?
• Did the PFAC experience meet your expectations? Why or why not?
• Did you feel that your opinions and experiences were heard and respected?
• Did you feel that your participation made a difference?
• Were meetings scheduled and structured in a way that made participation manageable?
• Did you receive enough orientation, information, and support to participate effectively?
• Were there any barriers that made participation  difficult?
• What did you find most valuable about serving on the PFAC?
• What could we have done differently to improve your experience?
• What advice would you give us for recruiting and retaining future Patient Partners?

Track the reasons members leave and periodically look for patterns. For example, multiple members citing meeting times, lack of meaningful projects, insufficient follow-up, or feeling that their recommendations were not acted upon may signal an issue that requires attention.

Exit interviews can also help distinguish between natural turnover, such as relocation, health concerns, family responsibilities, or completion of a member's goals, and preventable turnover related to the PFAC experience.

Best Practice: Do not wait until several members resign to examine retention. Review exit interview findings regularly and use them as another measure of PFAC effectiveness. Departing patient partners can provide some of the most candid and valuable feedback about how the council can improve.

The first meeting is an introductory meeting, which sets the stage for the successful launch of the PFAC. The meeting room should be comfortable with non-alcoholic drinks and snacks served for a relaxing social atmosphere. Chairs should be arranged so that everyone can see each other. Meetings should always begin and end on time and should include an agenda that should be distributed prior to the meeting.

The PFAC champion should lead off the meeting with welcoming the attendees, introducing themself and describing the purpose of the PFAC. AHRQ has an example of a 31 slide introduction PPT on their website, plus a handout, “Am I Ready to Become an Advisor?” and an orientation manual.

http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html

Next, the champion should ask everyone to introduce themselves, including their professional and personal background and the reason why they is interested in joining the PFAC. The champion’s role is to assess the individuals’ interactions with each other, looking for the qualities identified for ideal candidates.

Next, the champion can distribute the PFAC member job description and ask for a discussion about the qualities.  

Finally, the champion should close the meeting, mentioning that formal invitations will be sent out within the week. The debrief after the meeting should include a discussion about each person’s interaction, contribution, and perspective as a council member who will offer constructive suggestions, as opposed to having an axe to grind.

Most hospitals require Patient Partners to complete standard volunteer requirements, such as HIPAA, confidentiality, and safety training. See the AHRQ website for a confidentiality form:

http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html

While these requirements are important, they do not prepare Patient Partners for the unique responsibilities of serving on a PFAC.

Patient partners need education specifically designed for their role. They are being asked to review programs, evaluate communications, participate in improvement initiatives, provide feedback to hospital leaders, and represent perspectives beyond their own experiences. Providing the right training helps them contribute with greater confidence and effectiveness.

Training should begin during orientation and continue throughout the patient partner's tenure. Consider including the following topics:

Understanding the PFAC's Role

Patient partners should understand why the PFAC exists and how it fits within the organization. Training should address:

• The PFAC's mission, goals, and responsibilities
• The role of patient partners
• The role of the PFAC champion and executive sponsor
• How departments engage the PFAC
• How recommendations are communicated and followed      through
• Expectations for attendance, participation,      confidentiality, and respectful dialogue

Patient partners should also understand that they are not expected to be healthcare experts. Their expertise is their lived experience as patients, family members, and caregivers.

Storytelling

Patient stories can be powerful catalysts for change, but effective storytelling is more than recounting an experience. Teach patient partners how to communicate their stories concisely and connect them to an opportunity for improvement.

Training can help members:

• Identify the central message of their story
• Focus on the portions relevant to the issue being discussed
• Describe what worked as well as what did not
• Explain how an experience affected the patient or family
• Connect the story to a recommendation or potential solution
• Present the story within an appropriate amount of time

A useful framework is: What happened? (Problem) What could have been different? (Solution) What should we learn from it? (Benefit)

Providing Constructive Feedback

Patient partners may be asked to review everything from educational materials and websites to discharge processes, facility designs, policies, and new programs. Teach members how to provide feedback that is specific, constructive, and actionable.

Encourage them to explain not only what they like or dislike, but why and what they recommend changing.

Interviewing Skills

Some PFACs involve experienced patient partners in interviewing prospective PFAC members. Others invite them to participate in interviews of employees, particularly for positions that have significant interaction with patients and families.

Patient partners participating in interviews should receive training on:

• Asking open-ended questions
• Listening without interrupting
• Asking appropriate follow-up questions
• Avoiding leading questions
• Evaluating responses consistently
• Recognizing personal bias
• Maintaining confidentiality
• Documenting observations objectively

When interviewing prospective patient partners, members should understand the characteristics the PFAC is seeking and use a consistent interview process.

Understanding Quality Improvement

Patient partners do not need to become quality improvement professionals, but they should understand the basics of how hospitals identify problems, test changes, and evaluate results.

Introduce concepts such as:

• Quality improvement
• Patient safety
• Patient experience
• Process versus outcome measures
• Baseline data
• Before-and-after measurement
• Continuous improvement

This knowledge helps patient partners understand how their recommendations fit into larger organizational improvement efforts.

Understanding Metrics

Training in metrics is especially important for a high-impact PFAC. Patient partners should learn to ask how success will be measured before providing recommendations.

Teach members to ask questions such as:

• What is the problem we are trying to solve?
• What is the baseline?
• What measure are we trying to improve?
• What does success look like?
• How will we know whether the change worked?
• When will we see the results?
• How much of the change can be attributed to PAC      input?

Members do not need advanced statistical knowledge. They need enough understanding to connect their recommendations to measurable outcomes and to recognize the difference between activity and impact.

For example, “The PFAC reviewed the new discharge instructions” describes an activity. “After PFAC recommendations were incorporated into the discharge instructions, patient visits to the emergency room decreased from 12% to 6%” demonstrates impact.

Communicating with Hospital Leaders and Staff

Patient partners may interact with clinicians, department leaders, executives, and board members. Training can help them communicate confidently while maintaining their unique patient perspective.

Discuss how to:

• Ask questions when healthcare terminology is unclear
• Respectfully challenge assumptions
• Disagree constructively
• Request additional information or data
• Recognize when jargon may also be confusing to other      patients
• Speak up when the patient perspective is missing from      a discussion

Patient partners should never feel that they need to learn the language of healthcare to belong at the table. The organization also has a responsibility to communicate with patient partners in plain language.

Provide Ongoing Education

Training should not end with orientation. Provide brief educational opportunities throughout the year based on the work coming before the PFAC. For example, if the council will be reviewing hospital quality data, provide an introduction to the measures beforehand. If patient partners will participate in a patient safety initiative, explain the relevant safety concepts before asking for their recommendations.

Consider an annual refresher and additional training when members assume new responsibilities, such as interviewing candidates, serving on hospital committees, or participating in quality improvement teams.

Best Practice: Ask patient partners what training they need. Periodically survey members about whether they feel prepared to contribute and what additional education would make them more effective.

The goal of training is not to turn patient partners into hospital employees or healthcare experts. It is to give them the knowledge, skills, and confidence to bring their expertise as patients and families to the organization in the most meaningful and effective way possible.

Every PFAC should have a written charter that establishes its purpose, structure, responsibilities, and operating expectations. The charter provides a foundation for how the council functions and helps ensure consistency as patient partners, PFAC champions, and organizational leaders change over time.

At a minimum, the PFAC charter should address:

• Mission: Why the PFAC exists and the value it provides to patients, families, and the organization.
• Vision: What the PFAC ultimately hopes to achieve through patient and family partnership.
• Responsibilities and Duties: The roles and expectations of patient partners, the PFAC champion, executive sponsor, and other participants.
• Meetings: Meeting frequency, format, attendance expectations, and procedures.
• Membership: Eligibility, recruitment, selection, onboarding, and expectations for participation.
• Membership Diversity: The commitment to building a council that reflects the diversity of the patients and communities served.
• Membership Terms: Length of service, term limits, renewal procedures, and opportunities for continued involvement after completing a term.
• Quorum: The minimum number of members required to conduct official PFAC business or make recommendations.
• Confidentiality: Expectations for protecting patient, organizational, and other sensitive information discussed during meetings.
• Annual Priorities and Goals: How the PFAC will establish, review, and measure its priorities and goals each year.
• Removing Members: The circumstances and process for asking a member to leave the council, such as repeated absences, breaches of confidentiality, inappropriate behavior, or failureto follow established expectations.

The charter should be reviewed with every new patient partner during orientation and revisited periodically by the full council. At least annually, determine whether the charter continues to reflect how the PFAC operates and whether revisions are needed.

In addition to the formal charter, every PFAC should develop meeting norms, which define the behaviors members agree to follow when working together. Norms help create an environment where patient partners feel comfortable speaking candidly, asking questions, disagreeing respectfully, and sharing different perspectives.

Rather than simply giving members a predetermined list, consider asking the PFAC to develop and agree upon its norms together. This creates shared ownership and reinforces that every member is responsible for maintaining a productive and respectful environment.

Sample norms include:

• Start and end meetings on time.
• Communicate directly, honestly, and respectfully.
• Listen to understand, not simply to respond.
• Respect and value different perspectives and experiences.
• Assume positive intent while remaining open to constructive disagreement.
• Keep discussions focused on the topic at hand.
• Allow one person to speak at a time.
• Make space for everyone to participate. No one person should dominate the conversation.
• Ask questions when terminology, acronyms, or information is unclear.
• Maintain confidentiality when sensitive information is discussed.
• Keep cell phones and other devices on silent and minimize distractions.
• Notify the PFAC champion or meeting facilitator when unable to attend a scheduled meeting.
• Support decisions made by the group while recognizing that members may have different perspectives.

Best Practice: Display or briefly review the norms at meetings, particularly when new members join the council. The PFAC champion should also feel comfortable referring to the norms when a discussion becomes unproductive or when established expectations are not being followed.

A strong charter establishes how the PFAC operates. Strong norms establish how its members work together. Both are essential to creating a council where Patient Partners can contribute openly, respectfully, and effectively.

Occasionally, if a council member is not a good fit, the person may be asked to leave. AHRQ has an excellent example of language asking an advisor to step down:  

http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html

According to my survey, 67% of responding hospital PFACs had co-chairs and one third were volunteers and hospital employees, 22% just volunteers, and 9% just hospital employees. On occasion, PFACs are guided by hospital staff for the first six months and then by volunteers, which allows hospitals to scale the number of PFACs. 

There are three types of PFAC measurement: process, structure, and outcome. Process measures activities, such as the number of meetings and initiatives the PFAC discusses. Structure measures the PFAC’s capacity, such as membership, resources, and organizational support. The gold standard is outcome measurement, which measures the PFAC’s impact. For example, if a PFAC recommends an initiative to reduce falls, compare fall rates before and after the recommendation is implemented. 

PFAC impact should be measured from three perspectives: PFAC members, the departments that bring initiatives to the PFAC, and the metrics associated with those initiatives. Every PFAC should collect both quantitative and qualitative measures from members and presenting departments, as well as quantitative before-and-after measures whenever a PFAC recommendation is implemented. Periodically, distributing the results of these metrics to the C-suite will help garner support. 

Here is a sample quantitative and qualitative survey for departments after meeting with PFACs

On a scale of 1 to 5, how would you rate the following (1 = poor, 5 = excellent)

1. The meeting pre-planning (calls, discussion,  information you received, etc.) with the PFAC co-chairs                           
2. The meeting discussion with PFAC members                                                                                         
3. The value of the PFAC input you received at the meeting                                            
4. The impact the PFAC’s input will have on your project                                                       
5. Your interest in bringing other projects to the PFAC                                                                            

In a few sentences…

• How would you describe the benefit of the PFAC’s feedback.
• What was the most impactful idea that you heard at  the PFAC meeting?
• Please share examples of actions/next steps that you are going to take based on the discussion and advice you received from the PFAC.
• Please indicate any areas where we can improve presenters’ interaction with the PFAC in the future.

Usually, there is no lack of projects that the PFAC can undertake. Initially, PFACs brainstormed suggestions by the patient partners; however, now as PFACs gain more visibility augmented with support from leaders, oftentimes, departments come to PFACs with projects. Or PFAC liaisons may attend department meetings where they suggest topics for the PFAC.

In my initial survey conducted in 2014, respondents indicated the areas where PFACs undertook projects.

• Communication — 93%
• Quality — 83%
• Signage – 77%
• Safety – 76%
• Clinical areas – 74%
• Orientation – 57%

One of the challenges that a mature PFAC may face is that projects that have been successfully implemented may not have continued. That’s why it’s important to ensure that all projects are operationalized.  

By operationalizing projects, PFACs ensure that their valuable suggestions continue in future years. Operationalization includes writing projects into job descriptions and adding projects to procedure and policy manuals.

For example, one PFAC created pages with crosswords and Sudoku puzzles, available for both adults and children in the waiting areas. After monitoring the number of pages taken, the PFAC found that the puzzles were very popular. However, a year later the pages were no longer displayed in any waiting areas. The problem was that no one was responsible for replenishing the pages when they were depleted. The solution was to operationalize the task by including the assignment in the daily duties of one of the staff.

Every department that brings an initiative to the PFAC should be invited back in two to six months to discuss what they heard, what they implemented, and how the PFAC input changed the initiative. 

Critical to the success of the PFAC, as well as future budget increases and the number of personnel who work with the PFACs, is informing hospital leaders about the projects and the results. 

Periodic reports should include the following:

• Problem that the PFAC identified
• Research conducted on both the problem and the possible solutions
• Measurement of the problem (time, amount, money, etc.)
• Description of benefits (time, amount, money, etc.)
• Measurement after implementation

Two thirds of PFACs indicated in the survey that they provided an annual report about the PFAC accomplishments. Research further suggests that higher visibility attracts additional content to the PFAC substantiating that weekly or monthly reports for leaders and departments ensure that the PFAC accomplishments are promoted.  

In addition to joining PFACs, patients and families can participate in hospital committees as well. At many hospitals members participate in a wide array of committees such as quality improvement, bioethics, inpatient service, diversity, patient care evaluation, website, healthcare reform, etc.

In the 2014 PFAC survey, respondents indicated that patients and family members participated on the following committees.

Patient/Family Involvement | %

 Patient Care or Patient Experience | 57%

Quality | 49%

 Safety | 38%

 Facilities | 24%

 Board of Directors/Trustees or Board Committees | 23%

 Bio-ethics | 19%

Strategic Planning | 16%

 Marketing / Communications / Public Relations | 14%

 Diversity | 11%

Other involvement included operations, palliative care, research (PCORI grants), LEAN rapid improvement events, patient education, and grievances.